May 12

Ian Lipkin, professor of epidemiology and neurology at Columbia, recognized for his work on SARS and West Nile virus, science consultant to the film Contagion, has been at work on what he admits may be his toughest project to date: research into ME.

Kitei: There’s no federal money for ME research. Year after year there’s no money, and more is given to male-patterned baldness than to this disease.

Lipkin: Let’s backtrack and examine how these decisions are made. First of all, the National Institutes of Health gets money from the Congress. The Congress will mandate what it is they want people to do. The Department of Defense has funding for autism, for a number of other things that people push, including, as you mentioned, some disorders that are specifically male.

One of them is prostate cancer. The Department of Defense has been running programs on prostate cancer for decades. Why? Because men in the position to make those decisions have wanted research focused on prostate cancer, so they allocate money for prostate cancer. The NIH doesn’t allocate money for specific disorders. Those kind of monies are allocated in response to congressional mandates.

Now, Tony Fauci doesn’t have the ability to start a brand-new program on chronic fatigue syndrome. This is what I want to do. He’s continually being pushed to work on influenza, HIV, bio-threat agents, things of that nature. And there is a portfolio for chronic fatigue syndrome, which, as you said, is quite small. There are not many people working in this field.

…

Kitei: But it’s a vicious cycle. If you can’t get funding—

Lipkin: It’s not the leadership of NIH. That’s not the problem. The problem is that you need a champion in Congress who’s going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on. It has to be somebody who has some ability to influence the purse. And if that happens, the NIH would only be too happy to take the money and to allocate it and get the best science done. That’s all the NIH cares about.

Kitei: That’s a crazy way of doing things. If anybody should understand this disease, it’s scientists.

Lipkin: But they don’t listen to scientists. Congress doesn’t listen to scientists. They listen to people who vote for them. I was very involved in getting the autism bill passed, in the late 1990s and early 2000s. And it was two parents and a few of their friends who went down and lobbied on Capitol Hill and pushed through this first bill that created the autism Centers of Excellence. And it was the parents who did it. The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don’t have the energy or the resources that are needed to go and lobby…

Vulnerable people who do not have others looking out for them are most at risk for not getting the science that’s needed to address their problem.

But the solution for that is for the healthy ones, the people who have recovered, or relatives and friends of those who have these disorders need to push.

Of all the things I’ve lost, I miss my mind the most – ME Awareness Day, Monday May 12th

“The most confusing part was that my brain had given up — I couldn’t concentrate, think, read, write, make decisions, plan my day and so on. Nothing was working the way I needed it to work and that meant that I had to dig really deep to drive myself to perform the myriad of tasks that land on a principal’s desk.

Unknowingly I was driving myself into to an increasingly deeper stage of unwellness. While I didn’t understand what was wrong with me, there was something different about my ill health which led me to the conclusion that, “I just can’t do this anymore.”

“There are all levels of illness from those who are very severe and totally bedridden, through to those who are just about hanging in and able to get to work, but have no energy left for anything else at all.”

It’s not known what’s behind ME, but it’s suspected those afflicted have a genetic predisposition triggered by a viral infection. Mental and physical stress is also commonly found to lead to diagnosis.

But without a definite known cause and the absence of visible symptoms, sufferers say they often feel stigmatised by the public, who don’t believe they are genuinely ill.

*** Will you be available to help collect on 15 May for WellMe? ***

WellMe is collecting on Friday 15 May in Central Wellington and may be collecting on other days during the week to help raise awareness for ME/CFS and to help us continue the amazing work we are doing for people with ME/CFS in the Wellington Region.

For those who are not familiar with the history of May 12th International ME/CFS and FM Awareness Day, it was started in 1992 by Tom Hennessy to promote awareness of chronic neuro-immune diseases, including ME/CFS, FM, MCS and GWI.

Tom chose May 12th as ME/CFS Awareness Day to commemorate the life of Florence Nightingale, who suffered from an illness much like ME/CFS (probably brucellosis) — May 12th is her birthday.